DISABILITY AUG. 24, 2016
The checkout lady’s panic surged as she held the coins six inches above my hand and dropped them into my palm. They clanged until I made a fist. She ran her fingernails through her hair.
“What’s wrong with you?” she asked, her voice rising to a higher pitch. I slid the money into a jeans pocket and stroked my thigh to calm down.
“Just dry skin,” I murmured. That wasn’t true. I have lamellar ichthyosis, a genetic disorder which manifests itself in scales not just on my face, arms, hands which she could see but over my whole body. My skin is perpetually red and itchy. I can’t sweat well, so I’m careful not to get overheated, and I can’t walk far in strong sun. I naturally seek the shade. My skin isn’t painful, but much of the time, the entire surface of my body feels tight. My eyelids are pulled down by this tightness, too, so I often shield my face with a hat. Standing in the checkout line, I jammed the lovely straw boater I’d gotten in England down to blunt my face. Damn it, I thought, get me out of here.
I knew I could smile and tell her my condition was not contagious, but instead I hurried home through narrow city streets, slammed my heavy front door, and headed straight into the tiny walled garden in the back.
The garden is my refuge. It’s the reason I bought this house. Even a small leafy space is unusual among Philadelphia rowhomes and I craved a private place with fresh air and shaded light. I water my three trees in hot spells and nurture cool white moonflowers. The unseeing trees and plants comfort me. Pacing the bricks, I fought the instinct to go into the house and hide. I can’t spend my entire life in bed, I told myself, brushing Japanese maple leaves against my cheek to soothe my skin and my spirit. Hiding was a cop-out not the mature thing to do.
I don’t usually hide. I live in Center City Philadelphia where I see and am seen by people on the street all the time. I teach at a local university. I go out to dinner with my friends. But the cashier’s reaction shook me. I told myself she was new to that supermarket, didn’t know me, hadn’t been the recipient of my considerable charm. Still her words stung. Among my pots of fragrant herbs, I stripped a thyme frond, crushed the petals and inhaled their fragrance. I felt an overwhelming need to chuck my afternoon class, avoid my merry students’ faces, and burrow under my flowered quilt.
I settled in to the wrought-iron chair next to the garden wall and recalled a humid Philly summer day in 1953, when I was 7 and my mother took a flock of kids me, my brother, and two of our two young cousins to swim in a suburban pond turned swimming club called Martin’s Dam. Nonmembers like us paid a small fee at the admissions gate beyond which the spring-fed “swimming hole” rippled under hanging maples. Carrying our towels, we kids scampered after my mom who strode up to the gate to pay for us. When I got near the gatekeeper, she fixed her gaze on my abnormally red face and the shards of skin scattered like salt on my arms and legs. I lowered my eyes, tugging shame and surprise and fear into tight cords in my chest. “What’s going on here?” the woman asked.
“Nothing that’ll hurt you,” my mother shot back. “Just dry skin.” The gatekeeper let us in. I ducked past her and ran nearer to the pond, pretending nothing had happened. My mother did, too. I slithered into the cool green water up to my neck. When we left I draped my towel around my shoulders and scurried past the woman at the gate who had wondered if my scales would grow on her if I brushed her thigh.
That was more than 60 years ago, but I can still inspire fear in ordinary strangers, people who glance at me at the movies or on a city sidewalk. I tense up every time I stride past the iron railings through the park across from my house. I feel my jaw tighten at the sight of all those people. Will the guy in shorts ambling along with his groceries stare at my crimson face? Will the red-haired boy chalking an airplane on the bricks look up as I pass him by in flip-flops? In truth, most of these people are simply more interested in their own affairs than in me. But the starers have entered my inner eye. Whether they stare at me or not almost doesn’t matter.
Experts give high-minded advice about how to respond. When someone stares at me, I am to educate them. “You must be wondering about my appearance. It’s not contagious. I just have problem skin. It’s called ichthyosis and I was born with it.” I’m supposed to tell them what’s going on: ichthyosis comes from a recessive gene, like blue eyes. All very nice and instructive. But I can’t do this day after day, with starer after starer as I walk through the park on my way to meet a friend in the local cafe or past throngs of undergraduates on my way to teach Shakespeare.
No number of reassuring explanations can protect me from the underlying dread of infection that lurks beneath some of these stares. What’s it like to be the object of such fear? It forces me to dig for deep waters of self-love. It also makes me angry. Not long ago I leaned back from my screen when I came across a comment on the website of this paper from a reader about an article showcasing beautiful photos of people with albinism, port wine stains or Down syndrome. “Our perception of human beauty (and ugliness and deformity) evolved to encourage the selection of genetically fit mates,” he wrote, “and to reduce the spread of contagious disease.”
“Our perception of human beauty (and ugliness and deformity) evolved to encourage the selection of genetically fit mates,” he wrote, “and to reduce the spread of contagious disease.”
I tried to shake off this iteration of a debunked “evolutionary” basis for shunning. Then I noticed that nearly 100 people had “recommended” it with a thumbs up. I spun my chair around and kicked aside a basket of laundry, knowing these comments would linger like a fungus in my mind. This person might be surprised to know that my parents were both handsome, and that the kind of revulsion he was spreading can impel otherwise perfectly decent citizens to isolate anyone who looks radically different.
Even a person who scares some people has to make her way in the world. It’s become fashionable to tell a disability story in a hopeful arc, where the heroine may have moments of discouragement or fear, but comes out into full life at the end into mainstream schools, love and romance, full participation in the social world. Although I have done and had all of these, I still, now and then, allow myself to hide; I refuse, for a while, to encounter the world.
That day after the cashier stared at me, I did go to teach my undergraduates. I could never bail on my students. But back home in the late afternoon, I dropped plans to go out to a noisy restaurant with a bunch of friends. Instead, I took a book into my secret garden, read for a few minutes, and then bent to smell the purple hyacinths beneath my maple tree. Rising, I turned my face to the quiet clouds moving along the sky. I need these hours of retreat. And I claim them, not just as necessary to top up my courage to go back out into the world, but for their own still sweetness, their soft and leafy balm.
Information on ichthyosis can be found at http://www.firstskinfoundation.org.
Anne Kaier is the author of the memoir “Home With Henry” and the personal essay “Malade,” about a trip to Lourdes, in 1966journal. She teaches at Arcadia University.
Disability is a weekly series of essays, art and opinion by and about people living with disabilities.